Sick after eating gluten-free Cheerios?

Sick after eating gluten-free Cheerios?

On Monday and Tuesday of this week Gluten Free Watchdog sent a compilation of detailed illness reports related to Cheerios consumption to the FDA Consumer Complaint Coordinator in Massachusetts, the Director of Food Labeling and Standards at FDA, and the Deputy Commissioner for Foods at FDA.

Of late, there are many reports on social media of people becoming sick after eating gluten-free labeled Cheerios. In fairness, there are reasons why people might be having gastrointestinal symptoms that have nothing to do with gluten contamination. These reasons may include an increase in fiber intake due to overzealous Cheerios consumption or an inability to tolerate oats especially if this is the first time oats have been added to the diet since a diagnosis of celiac disease. Regardless, each and every report of adverse reactions to gluten-free labeled Cheerios should be taken seriously.

Gluten Free Watchdog is compiling reports of illness from consumers who believe they have become sick after eating gluten-free Cheerios. We will be submitting this information to the FDA. While consumers are being encouraged to contact both General Mills and FDA, reporting to the FDA may seem cumbersome to some people. The information submitted to Gluten Free Watchdog will remain private and will be provided only to FDA.

If you believe you or a family member has become sick after eating gluten-free Cheerios, please send Gluten Free Watchdog an email that includes the following information (info@glutenfreewatchdog.org):

Related

Share this post

Author

Comments (61)

I so appreciate all of your work and care on this subject. You are fabulous!!! Just wanted to note though that I thought it was interesting that people becoming ill truly might be from the overzealous intake of this tasty cereal. I can see how celiacs who have never touched oats before or don’t eat a lot of fiber (such as oats, whole grains) can react from this. For example, I make a wonderful flourless GF Oatmeal muffin for my kids (using Bobs Red Mill GF oats of course.) I know that after they have had a few, they are extremely “regular” and I even offer this recipe to friends who complain of constipation as I know it is like swallowing a few metamucil; and they always tell me it helps. 🙂 My sister in law, who nearly died of celiac at the age of two from her body literally shutting down because no one knew years ago about celiac, has been the epitome of celiac and has had the cleanest diet since her diagnosis 40 years ago. She has tried the Cheerios and has had no reaction. My 6 year old who is true Celiac (diagnosed) and extremely sensitive to the slightest of contamination has been eating them and STILL NO REACTION. So, in the end, I am a bit skeptical. But thank you. I continue to look forward to the reactions and the outcome.

Thank you so much Amanda. So good to hear that everyone in your family has been fine. I will feel a lot better about this cereal when 1) the reports of illness are investigated and 2) additional testing of individual boxes of cereal is incorporated into General Mills’ testing protocol when extraction values used to compute lot means are at/above 20 ppm gluten.

I have have had Celiac for over 35 years; and while I don’t want anyone to get sick, there could be MANY reasons people are. Straight out saying this cereal isn’t gluten free, or other false statements without scientific evidence makes me sad. I can’t believe a company like General Mills would release food, knowing it isn’t really safe. Why would they open themselves up to that?

I think people need to take a deep breath and let the science and evidence do it’s thing.

It is very difficult to know what we are “seeing” with Cheerios. We are likely witnessing something unprecedented–a large number of people with celiac disease and non celiac gluten sensitivity introducing a new oat-based product to their diet and all at the same time. Are the individual reports of illness due to cross-contact, heightened sensitivity of some people to very low levels of gluten contamination, an immune response to oats, over-consumption of oats (Academy of Nutrition and Dietetics recommendation is no more than 50 g dry oats a day), increased intake of fiber, etc. A combination of factors is likely at play. Regardless, all reports of illness should be investigated to help provide answers. It remains the position of Gluten Free Watchdog that due to our continuing concerns about the testing protocol used by General Mills to determine the “safety” of gluten-free labeled Cheerios we cannot recommend this product to the celiac disease community at this time. We are specifically concerned about the apparent lack of follow-up testing on individual boxes of Cheerios when individual test results used to determine a lot mean are at or above 20 ppm gluten. We welcome updated test results from General Mills. To read our position statement please see https://www.glutenfreewatchdog.org/news/gluten-free-cheerios-updated-position-statement/

In defense of those getting sick, I will add that I got sick after trying the honey nut Cheerios this weekend. I had two bowls over two days, I am a regular consumer of gf oats and whole grains, and I definitely felt like I had been glutened. It wasn’t HORRIBLE, but it was enough to affect my eating and energy levels for a few days.

Definitely more gluten in some of those boxes than should be allowed by the fda.

I agree with Amanda’s post above. I have Celiac Disease and have tried Cheerios (yellow box) and didn’t get any reaction. I would like to note that I did follow the serving suggestions of 3/4 cups and didn’t drown it in milk as I haven’t consumed that much amount of milk as well. I hate seeing this petition started by somebody who hasn’t even tried the product at all. I also think that most people need education about their own bodies instead of blaming a product that is truly created so that we can keep the “American cereal” into our tables especially for us with celiac disease.

Thanks for you comments, Erin. By petition, I assume you mean the one posted on change.org. The illness reports must be investigated to help figure out what we are actually seeing in terms of reactions. Cross-contamination? Too large an intake of oats? Immune response to oats? Too much fiber?

I applaud the brave person who started the petition. She is looking out for the best interest of the entire gluten-free community. Why should she risk her own health before starting a petition? Just because she didn’t choose to risk her own health by eating Cheerios doesn’t mean she is uneducated about her body, about Celiac disease or medically diagnosed NCGS. She saw numerous reports of illness and moved quickly in hope of setting change in motion. Instead of being divisive in our community, how about we applaud her for doing SOMETHING to help when most do nothing?

I didn’t try the cereal because I had read Tricia’s information and knew it wasn’t produced or tested safely for our community. Once I spoke up about it and saw the numerous reports of people getting sick from one gf product, an amount that surpasses anything I’ve seen before, I didn’t want more people getting sick because they didn’t know about the procedures and testing. I have nothing against “American cereal” or people with Celiac/NCGS eating truly gf cereal if they choose. I want that gluten-free label that GM puts on each box to truly mean gluten-free.

Thank you, Debi. As you have written previously, this truly should not be a divisive issue in the gluten-free community. We should all be thinking long and hard about the use of oats not grown under a purity protocol, testing methodology, and the number of individuals (many of them children) getting sick.

I have celiac and have tried them. Yup, I am terribly sick, and am very very mad. Don’t eat them. I have suffered celiac for over 10 years. In the begging I could “cheat” and suffer the consequences within the month, I accepted that. However now if I would have my real piece of pizza within the next couple of hours I will be violently vomiting. I have to stay away from traces of wheat because I get sick. That is where I have been for the last week, sick. I can’t ingest anything. The acid in my stomach, the pain in my stomach, the nausea etc. Everyone should have a fair choice. Cheerios has not done a well enough job. They should not be called gluten free. I guess our best bet is to only eat celiac disease fondation approved food. The worst part is people who don’t have celiac need the nutrients found in wheat and gluten so all those who do gf as a fad diet are just hurting themselves.

Hi Angela, I am sorry to hear that you are sick. Please contact your physician and General Mills. Also, if you could please provide me with the information requested in this post (or as much of the information as possible), it will be included with the report that will be submitted to FDA.

People (even celiacs) saying they didn’t have a reaction doesn’t mean they are safe or completely gf. Making the cereal safe to eat is more important than getting the product to market. It’s more than just people not feeling well; the mean lot testing protocol is just not safe enough for celiacs.

I became ill after eating the Honey Nut Cheerios the first time. I tolerate pure GF oats very well. Since I have Celiac disease and a wheat allergy, I can usually tell quickly if I am eating something with more than a tiny CC. I felt the scratchy throat while eating them, and then had abdominal pain for several hours. I can not complete all of the info asked for since I gave away the rest of the box. Very disappointed as Cheerios was my go to cereal before my diagnosis.

Unfortunately, I’ve been one of the very unlucky ones and have had nasty reactions to the GF regular, Honey Nut, and Multi Grain Cheerios. Like Cindy, I have celiac and tolerate GF oats quite well.

I contacted General Mills today and provided them with the product info from the three boxes I had. I was met with a slight bit of condescension and insensitivity when sharing details of how sick I had become after eating their “gluten free” products. The customer service representative even told me that she had “never heard of such a thing”.

Thanks for your work, Tricia. Let’s hope General Mills and the FDA take our claims seriously and respond swiftly.

Sorry to hear all of this, Michele. Can you please email me with your information so that it can be provided to FDA (tricia_s_thompson@hotmail.com). If you could answer as many of the questions as possible that are included in the post above that would be great. Thank you!

I had a bad experience and called them today as well. I was met with a lot of questions and an apology. They will be refunding my money. I stressed that they need to look into this. Then, I started researching information and found this website. I forwarded the requested information. In the meantime, this product is on my NO buy NO eat list.

I hope this starts a conversation with the FDA and/or with General Mills that people who have Celiac Disease need products 100% free of gluten (none of this whatever per millimeter- 100%). Testing once in a while doesn’t fly.

PPM stands for parts per million–how many parts out of one million parts is the contaminant (e.g., gluten). It is the same as milligrams per kilogram because there are one million milligrams in one kilogram. The lower limit of quantification for the R5 ELISA is 5 ppm; the limit of detection is 3 ppm. There is no test that measures to zero.

as per Cheerios website: The first ingredient in Cheerios™ is whole-grain oats. Oats are naturally gluten-free, but the general oats supply comes with small amounts of wheat, rye and barley that are introduced at the farm and during transportation. We have created a process that allows us to remove the wheat, rye and barley from the oats we purchase, making Cheerios gluten-free. It’s that simple!

This is why most celiac’s avoid eating oats, even gluten free certified oats like Bobs Mills have 20ppm. Seeds blow around and wheat gets into the oat fields.

They also state on their website that: Trace amounts of genetically modified (also known as “genetically engineered”) material may be present due to potential cross contact during manufacturing and shipping.

GMO grains are known to cause digestive disturbance in a lot of people. Particularly GMO corn. BT corn punches holes in the guts of bug who eat the BT corn. Some hushed up research implies it also does this to humans. Round-Up ready corn produces it’s own pesticide. And it does this in your gut after you eat it. No wonder so many of us have digestive illnesses.

Unfortunately a lot of gluten free products contain corn that is GMO.

So it may be traces of gluten in the Cheerios or it might be traces of GMO corn.

A lot of these companies jump on the gluten free bandwagon because as Cheerios states “they have realized that 30% of the population cannot buy their cereal because they are allergic.”

It still may not be good for someone allergic to gluten to have. And likely someone is going to still react to it since they have not revealed the process they claim they “developed” to remove gluten from the gluten containing oats they are using.

In the past, on other FB posts, I’ve commented on how I’ve been eating Cheerios without noticeable reactions. That story changed after opening a new box and ill for nearly a week. It wasn’t until I was awake long enough to realize what had happened. There really was nothing else I could think of that caused it since I cook my own meals in my dedicated kitchen.
2 bowls kicked my butt.

To the best of my knowledge, no. BUT the likely contaminant in Cheerios is barley per information from General Mills. The EZ Gluten assay has very low cross-reactivity with barley meaning that unless contamination is very high it will not be detected even when it is present. In addition, it is very difficult to test for gluten. Unless a consumer is homogenizing a food to a very fine particle size before testing the results are only useful for measuring the gluten level in the very small amount tested.

Neither my son nor I Have had any reactions to the cereal by Cheerios. It is delicious and I’m glad to enjoy it. I’ve had diagnosed celiac for 18 years and my son for 5 years. Extremely sensitive individuals should choose another cereal.

I am Celiac I tried the GF Cheerios first Honey Nut It was fine. WHen I had the Apple Cinnamon I got sick.I always eat the GLUTEN free oatmeal What’s the deal? I haven’t been sick and I am always careful.

My son (non celiac, unconfirmed wheat sensitive) ate about half a box of Cheerios. He was so excited that they were now gluten free. He tolerates GF oats well. About 2 hours later he threw up for 8 straight hours. He has never vomited due to food before.

I have eaten the honey nut with no side effects. I opened a box of the apple cinnamon and been beyond sick from yesterday. I have had celiacs for 4 years nw and have been so careful. I am writting this in shere agony. It feels like someone is stabbing me in the stomach with knives and i cant stop going to the bathroom. What is worse is the backache from it. I did not eat anything yesterday but this cereal. I am so upset. I wouldnt of even eaten it if it didnt say gluten free!##

I really have the same negative sentiments as many above. I’m very gluten sensitive – After eating the Honey Nut Cherrios in a meeting, I grew heavily anxious over the next two hours and felt plenty of bloatin and GI discomfort along with neuro effects to my breathing which are consistent with ingesting gluten. I’m sad to report, I will not be finishing my box or purchasing the brand going forward. My girlfriend is pissed the box is now smaller, so I suppose General Mills has some work to do to help both of us.

I became very ill on September 24 and had to goto the local E.R. after eating Apple Cinnamon Cheerios that day. I required IV fluids due to severe diarrhea and vomiting and 2 shots of medicine. I have just reported my case to the FDA. I have had Celiac Disease for 4 years.

My daughter had a gluten reaction after trying gluten free cheerios this week, she is very ill this afternoon. She used to be oat intolerant, but now regularly eats celiac-safe oatmeal. So I do not believe it’s the oats causing the issue. She also suffers from dermatitis herpetiformis and is having eruptions for the first time in a couple of years after eating the new gf cheerios. It is very disappointing. I will fill out the report as soon as I get home and can get the information off the box. I read that there was a recall due to a wheat flour contamination, but that was back in September and it is already December.

After eating GF Cheerios from Costco, I’m a mess too! And I eat GF oats without any problems. I started a search on the internet to see if there was something else in the Cheerios that was tearing me up, since there was supposedly no gluten! Appears that Gluten Free means something else to GM. Thanks for the information, I will report, then throw this stuff away!

I had gotten sick from cheerios in general, for the past year and a half almost two years I noticed everytime I eat cheerios I get this eggy sour milk taste in my mouth and like rotten food it’s not the milk cause I don’t have an issue with any other cerial with milk just cheerios . . But no one else in my family but me has gotten sick !!

has anyone got a rash from the cheerios. I have not eaten them in years and decided to try the gluten free regular cheerios. I have a rash that I showed my allergist and she said it was a gluten rash. I reminded her I dont eat gluten having sensitivity to gluten hops barley and malt. she told me to stop eating cheerios.. cheerios were the only thing I added to my diet. i havent eaten cheerios in a couple days now. I was eating them almost everyday for a week. sometimes twice a day. I wish it werent the cheerios but I dont know what else it could be.

Tina, It is really important to contact FDA and share this information with them. Here is the information again for everyone: If you believe you became ill after eating Cheerios, FDA is asking that you contact FDA’s MEDWATCH, the Adverse Event Reporting System. You can do this online https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home or via phone (800) 332-1088. Choose option #4 to speak to a representative. You write that you have a sensitivity to gluten. Have you been tested for dermatitis herpetiformis (the skin form of celiac disease)?

I am not diagnosed Celiac, but have been GF for over 2 years due to other autoimmune issues. I was so happy to find GF Cheerios, but after eating 3 bowls of Honey Nut Cheerios in 2 days, I have been in excruciating pain for 2 full days now, and counting, Not sure if I just overate them, or the amount of sugar is killing my stomach, but I am a mess!!!

Someone needs to stand up to the food industry’s efforts to dilute what ‘gluten-free’ means to reduce their own input costs, and the FDA seems to be MIA on it, unfortunately. Celiac disease patients like myself are the ones paying the price for cheap ‘gluten-free’ for all.

May I politely suggest an effort similar to what you did above with Cheerios, to encourage reporting of incidents related to ‘gluten-free’ wheat starch products? I ate Schar Gluten-Free Croissants last night and I’m so sick today!

How is it OK to sell this stuff as safe for celiacs when there is absolutely no proof that it is?!? Celiac disease is a serious autoimmune condition!

I admit I would like it if gluten-free products were cheaper (it’s expensive eating only gluten-free foods, short of living on beans and rice all the time), but making them cheaper by sticking 20ppm gluten in them doesn’t make them cheaper at all; a day or missed work and a doctor’s visit more than cancel out the dollar or two of savings.

I don’t know how to go about reporting how sick I got after eating those ‘gluten free’ croissants, and there didn’t seem to be a category that allows consumers to report food-related safety incidents at all on the link above? I tried reporting it under the ‘supplements’ category instead and it crashed halfway through. It seems like the FDA really doesn’t want those under its rule talking back on whether their new ‘gluten-free’ rules are actually safe…

Any tips on getting the FDA to listen would be very much appreciated. I would love to able to eat all those shiny new ‘gluten-free’ products on the supermarket shelves, but since I’ve reacted very strongly to both ‘gluten-free’ oats and ‘gluten-free’ wheat starch, the gluten-free label is now entirely meaningless and unhelpful for me; I’m back at square one reading every ingredient on any packaged food I dare eat. Sigh.

(Sorry for the essay; I’m furious at being very sick today, thanks to those yummy croissants.)

Tricia, this is kind of concerning. I do not have celiac disease, but every time I’ve eaten this cereal, I get violent diarrhea. I have not eaten ofyen, but my children like it. I ate it a couple times over the summer and then again today. Always ends with diarrhea. I’m worried about what is in the cereal. I have eaten it in the past (literally years ago) and nevery had diarrhea. I’m just freaked out a bit.
Katie

Katie, my recommendation is to contact General Mills and report your symptoms. Keep in mind that the difference between “gluten-free” Cheerios and regular Cheerios is the “cleanliness” of the oats. Oats used in gluten-free products, such as Cheerios should have fewer wheat, barley, and rye seeds. Regular commodity oats are highly likely to be contaminated with wheat, barley, and rye.